Altering lifestyle & appearance to deal with TN

General General TN & GPN (Old Site)
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I’ve had ATN for 13 yrs. I’ve been lucky enough to have (for the main part) good doctors who know how or are wiling to research how to best help me. As expected, the constant pain and the break through pain are both increasing. I’ve learned to live out of the sunlight (Tegretol) and stay out of the wind (tricky where I live). However, now the slightest breeze, movement of my hair on my face, even putting on makeup (always tricky…but do-able until recently) tends to “wake” my face up.

I’ve resorted to wearing a microfleece balaclava even on calm days so I can still ride bikes or work on our hobbyfarm. I’ve recruited family to create a more lightweight one so it’s not so hot!

I’m thinking the next step is cutting my hair so that it stays off my face.

Anyone out there have issues with their hair? How about wind working outside? Anyone know of a place that sells apparel designed to help us keep up our active lifestyles? I’m just not ready to give up the outdoors or my profession yet.

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This is a nice one for spring summer fall.
I cut all my long hair off wanted to shave my head. Now growing it back because I missed it so much. I use tiny clips and bobby pins. gently pull back at neck for pony. Probably will keep it shoulder length.
Tree
196-image.jpg (1.95 MB)

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oh yes I have the same issues and a ridiculously large scarf collection. I will never leave the house without a scarf to either hide from the sun or the wind and always a sweater so I don't catch a chill going in air conditioning. my daughter cleaned out the car last week and brought in a pile of scarves because I seriously will get nervous if I don't have one around, I mostly wear my hair pulled back but I will put it down to help block the wind. sorry yours is triggering.

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I have the same issue with hair. I was at the salon yesterday and was almost sick in the chair when she had to blow it dry. I try very hard to stay away from being outside in the wind or being around anything that will make my hair move. I keep my shoulder length. I am not sure cutting it any shorter will make a difference for me.

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I have what I call "naturally obnoxious" hair. I have a ton of really fine, frizzy hair, so I have to style it or I look like a freak show. I had cut it into a pixie before TN, and I didn't have to blow it dry, but my husband has asked me to grow it out a bit. So now I have to use a blow dryer and a straightener on it, and I am really noticing how tender my scalp is. I have type II, and my head actually feels wonderful when I step out into the cold air (but not when I put a cold pack on my head ... go figure). I'm worried about how my head will feel in the heat of the summer. Anyway, I think pixie haircuts are really cute, and I think they would minimize hair movement.

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Can you still feel the wind through the scarves? It seems to never stop blowing here and can be icy cold even on a warm day. I distrust my ability to fix a scarf well enough scarves to keep them on while working outside or biking.

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Hi Flarakara,

I sometime have issues with my hair - not major though. Just sometimes if I pull it back it feels as if my hair is being ripped out of my scalp. But this only happens occasionally. I have a scarf collection as well and I'm starting a hat collection as well. I'm usually never without a hat and a scarf (pretty much all the time).

I feel like having a meltdown if I've lost the hat that I normally wear or forget my scarf as it just hurts. I hate going out in the mornings when the frost is there. I hate the wind during the day and I hate the cold in the evenings. Seems like I hate everything. I really don't. Just have to make the most of a bad situation. I live in England so at the moment even if it's nice outside there is still wind, so wrapping up and keeping warm is the objective here.

I tend to wear my hat in my house as well just in case and I don't sit by the window anymore or really go out in the evenings. I actually found a ski mask but because of the way that it sits on my face I cant wear it as when bad my cheekbone swells so its very irritating and hurtful to wear it. But scarves and hats and coats with hoods help greatly.

I also find makeup tricky - so I hardly wear anything anymore. I've also learnt to style my hair in ways that help to block the wind as well...

:-)

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Marcie, if only I looked good in a hat and it didn’t mess up my hair for work. I guess it’s trying to juggle keeping that professional appearance, an active lifestyle and dealing w/ the reality of the increased pain in my face. I’ve noticed an increase in struggling w/ make-up, so I’ve even had a minimal amount of permanent make-up done so that on my worst days as long as I can fake it with my attitude, my one make-up free eye, or mascara smeared cheek, doesn’t give me away.

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Many police and tactical stores carry Nomex and Kevlar hoods that leave a round section over the eyes open. They come in tan, green and black. I usually were a tan because it appears less threatening to people than black. It fits like a second skin but, not too tight to as cause pain ( most of the time ) cold and strong breezes may still come through and cross that bad threshold. In the winter I wear the black fleece balaclava because it keeps out cold better and only use it for short exposure. The Nomex and Kevlar are thin enough and exchange heat nicely. This does not work if you are very touch sensitive. My trigger is very light breezes and cold mostly. You can’t stop the barometric pains and, as you know, sometimes the boogers just want to zap you for no reason it seems. I usually wear a hat of some type with it to make it look a bit less strange. Hint: get a note from your doctor stating it and sometimes glasses are worn, and keep the note on you for mall security or anyplace someone might challenge your right to wear it.

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Hi. I have been dealing with TN for 2.5 years. Wind and noise have always been my biggest triggers. Hair is a factor for me. I do have short hair, but it can still touch my face. I have thought about shaving that side of my hair in a "Sinead O'Connor" look. I haven't yet, but definitely a possibility. We had a cruise scheduled 2 years ago and I was very concerned about the wind. I had Botox injections 3 weeks prior to the cruise. I cannot tell you how horrible the pain was during the injections or for 12 hours after, but they worked for 3 weeks. Took 3 weeks to work, and then only kept the pain at bay for 3 weeks, but I enjoyed the cruise. I am going on another cruise soon and have not done the injections. Not sure how it is going to go, but we will see. I also own and use many scarves. Sometimes, the scarf touching my face hurts - just depends. I am very much a firm believer in not letting TN control my life, but that is becoming harder and harder.

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You may be able to try a light spray of aerosol makeup. It looks better than any other foundation too.

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I use Capsaicin HP so that I can still bike and be outside in the spring, summer, and fall. Just be careful not to get it on unaffected parts of your body or eyes. I can't feel it on my affected side, but if I get it somewhere else, it really does burn.

I have a high schooler who plays football, and I refuse to miss one of his games. This has allowed me to be at his games as well. Sometimes I have to sit on the visitors' side to avoid straight winds in my face, and I have tears in my eyes even when they're winning, but I am lucky enough to still be able to tough it out.

In the late fall and early winter, I live with my thick scarf, a big parka coat that I can pull up the hood, and big sunglasses. One of these days, I'm probably going to get arrested or at a minimum be under surveylliance... as I look like I'm ready to rob a bank. But I'm at the place where looks take a back seat to function.

Below is some information about capsaicin.

Capsaicin is the ingredient found in different types of hot peppers, such as cayenne peppers, that makes the peppers spicy hot. You can eat it in raw or cooked peppers or as a dried powder, which you can add to food or drinks. It also is available as a dietary supplement and in topical creams that you apply to your skin.

What is capsaicin used for?

When a capsaicin cream or ointment is used on the skin (topical use), capsaicin helps relieve pain. Capsaicin works by first stimulating and then decreasing the intensity of pain signals in the body. Although pain may at first increase, it usually decreases after the first use. Capsaicin stimulates the release of a compound believed to be involved in communicating pain between the nerves in the spinal cord and other parts of the body.

When you apply it to the skin, capsaicin may help relieve pain from:

In general, you use creams containing capsaicin for pain relief. You can put the creams on your skin up to 4 times a day. You may feel a burning or itchingsensation the first few times you use the cream, but this will gradually decrease with each use. Wash your hands thoroughly after each use to avoid getting the cream in your eyes or on other moist mucous membranes, where it can cause a burning sensation. Do not use the cream on areas of broken skin.

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I don’t have any dx of any sort at this point other than TMJ from the 1970s, but I’ve had a lot of problems like that. I wear my hair in a ponytail (the back of my neck doesn’t bother me) and hair clips to keep any strays off my neck. I stopped wearing turtlenecks, sometimes have a problem with collars, and do like my balaclava in the cold and wind. (I really never have tolerated heat, so in the summer I spend a lot of time inside.)

I do don’t know (haven’t dug into it) of any retailers like that, but I suppose maybe you could see if there are any that do sun protection, as that might work in the summer.

Good luck.

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I used the 3/4 inch blade from the clippers I cut my hubby and sons hair with and shaved my head!! I could NOT handle my hair being moved by anything! Plus, I have a rather large scarf collection and found a video made by a soldier in the middle east teaching how to wrap a scarf to protect your face from the desert winds!! Thankfully, my TN has gone into remission for the moment and I haven't gotten to embarrass my kids to much with it!!

Jessica

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For some reason my hair doesn't really trigger pain but the cold and wind is the biggest issue when i am outside.

I have lots of scarves but last year someone suggest a 'buff' ski mask thingy. I now have a range of them in various fabrics and find them so much easier than a scarf. Somehow i could never manage to keep a scarf in place and now i can wear something that is hands free.

All year round i keep a lightweight one in my handbag and now that winter is approaching I have started carry one that is thicker. I do get the odd comment and strange look but I really don't care any more, I do whatever it takes to stay as pain free as possible.

Hope everyone is having a good day.

Hugs Trish

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Hi

You are so creative…good job. I hope you continue to find ways to decrease your pain and discomfort. I have not heard of hair being a trigger but I am sure it is, especially if heavy

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Trish, I had never heard of th Buff line until you mentioned it. I looked them up. Which kind do you use, the infinity scarves or the bandana scarves (or something else)?

Beth

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Trish, those are awesome! I ordered one b/c there’s no way to know if it’ll work for me w/out trying it. I watched the ‘how to wear’ video and almost laughed out loud I was so happy to have an option that will easily conform to how my face is doing and to my situation. Now, if only it works for me : )

Everyone, thanks for so much input and support!

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It's funny how the TN triggers vary for all of us! The wind is horrific for me but I can't have anything - except my hair! - touch my cheek or jawline so I can't wear a scarf. Luckily there's not much wind where I live but when there is, I wear my husband's sweat shirt and hold the "lapel" out in front of my face without it touching me. I'm sure I look like I'm about to rob a convenience store but it's the best solution I've found.

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also, I have a handmade knitted "tube scarf" that works pretty well for me

here's the etsy search showing similar https://www.etsy.com/search?q=tube+scarf&ship_to=US&page=1

mine is like the "chunky" types listed